This blog is totally independent, unpaid and has only three major objectives.
The first is to inform readers of news and happenings in the e-Health domain, both here in Australia and world-wide.
The second is to provide commentary on e-Health in Australia and to foster improvement where I can.
The third is to encourage discussion of the matters raised in the blog so hopefully readers can get a balanced view of what is really happening and what successes are being achieved.

Wednesday, March 30, 2016

The Privacy Commissioner Releases A Large Collection Of New Documents On My Health Record.

I noticed these a day or so ago.

They are termed Privacy Fact Sheets and for some reason they are not numbered in a form that seems to make sense but you can use a single link to see them all - or use the list below.

Privacy fact sheets

This section holds fact sheets that give a general overview of a topic or subject area for individuals.

If you have a My Health Record or are considering whether to get one, this fact sheet explains what to consider over the lifetime of your record.

What is a My Health Record?

A My Health Record is an online summary of your health information, such as medicines you are taking, any allergies you may have and treatments you have received. It was previously known as a Personally Controlled Electronic Health Record (PCEHR) or eHealth record.

Your My Health Record allows your doctors, hospitals and other healthcare providers (such as physiotherapists) to view your health information, in accordance with your access controls. You are also able to access it online yourself.

In most parts of Australia you need to actively register for a My Health Record. However, people whose registered Medicare address is in Northern Queensland or the Nepean Blue Mountains will have a My Health Record automatically created for them by the Australian Government. If you are registered as living in either of these areas and don’t want a My Health Record, you will need to opt-out by 27 May 2016.

You can use the postcode checker on the My Health Record website to see if your registered Medicare address is in one of these areas. If it is, you should also receive a letter and brochure from the Australian Government with further information.

This fact sheet is for everyone who already has or will soon have a My Health Record and anyone else who is thinking of registering for one. This includes people whose registered Medicare address is in Northern Queensland and the Nepean Blue Mountains region.

1. Read the System Operator’s privacy statement carefully before you opt in

Make sure you understand how the information in your My Health Record can be collected, used and disclosed.

The System Operator is responsible for the operation of the My Health Record system. You can read the privacy statement, which applies to personal information collected by the System Operator for the My Health Record system, online.

If you have any questions about this, call the System Operator on 1800 723 471.

2. Be aware of the different access settings available to you

Consider setting your access controls as soon as you register for a My Health Record or have one created for you. It’s a good idea to review them regularly, especially if your circumstances change or you begin treatment with a new healthcare provider. Check your ‘access list’ regularly to see who can access your My Health Record. If the default settings are set, you should know what they are and what they could mean for you. Think about whether you want to restrict which healthcare providers can access your record and what information is included.

Advanced access controls allow you to restrict which healthcare providers can access your My Health Record. You can also restrict access to particular documents. If you set up a ‘personal access code’, healthcare providers will only be able to check if you have a My Health Record and access it if you give them your code. Personal access controls may be overridden in an emergency, if it is unreasonable or impracticable to obtain your consent.

4. Read the privacy notices and policies of your healthcare providers

Different healthcare providers will have different information management practices. For example, you can restrict which healthcare providers can see your My Health Record but you cannot restrict access by individual staff members. Find out which areas of the healthcare provider will have access to your My Health Record.

5. Talk to your healthcare providers regularly about what information they will be adding to and accessing from your My Health Record. Ask how they will involve you in this process

If you don’t want a certain document added to your My Health Record, make sure you tell your healthcare provider. If they have added a document that you don’t want on your record, ask them to remove it. If they refuse, you can remove it yourself by logging in to your record. You can later ask for it to be restored if you choose.

Documents that have been removed will still be accessible to the healthcare provider that uploaded them through their local IT system. This is because they created the documents and can access them on their own local IT system rather than specifically through your online My Health Record. They may also be retrieved for authorised purposes, such as by order of a court. However, once removed from your My Health Record, they won’t be accessible in an emergency so you should consider whether there is any information that could be needed in such a situation. It’s a good idea to discuss these issues with your healthcare provider.

6. Check your My Health Record access history regularly

Check for any unexpected or unauthorised access. The access history function identifies healthcare provider organisations that have accessed your My Health Record. However, if you want to find out the name of an individual who has accessed your record, you can request this by calling the System Operator on 1800 723 471. The system access history will only include access to your My Health Record. It will not include information about who has accessed information that has been downloaded into a healthcare provider’s local systems.

7. Check your My Health Record regularly to ensure that the documents it contains are kept accurate, up-to-date and complete

If any information is inaccurate, out-of-date or incomplete, ask the healthcare provider that uploaded the information to correct or complete it. If they disagree, you can ask them to attach a statement to the document stating what you consider to be inaccurate, out-of-date or incomplete. If you don’t feel comfortable approaching the healthcare provider directly, you can call the System Operator on 1800 723 471. If it is a private sector healthcare provider organisation that is unwilling to correct or complete your record, you can also make a complaint to the OAIC. Old versions of documents will still be retained by the system. If there are any important documents that you think should be included on your My Health Record, talk to your healthcare provider.

8. Secure your My Health Record

Make sure you set a strong password and don’t share it with anyone else. If you are accessing your My Health Record via the online consumer portal, ensure that the device and connection you use to access your record is secure. For example, you should install reputable anti-spyware, anti-virus scanners and firewall software and avoid unsecured wi-fi networks. General advice to help you keep your information safe online is available at staysmartonline.gov.au.

9. Exercise your privacy rights

The My Health Record system is protected by the My Health Records Act 2012(My Health Records Act). The protections in the My Health Records Act are in addition to those under existing privacy legislation. Once information is downloaded into a healthcare provider’s local records, existing privacy legislation will apply. There are civil and criminal penalties for individuals and healthcare provider organisations who don’t comply with the My Health Records Act. If you suspect that the information in your My Health Record may have been mishandled, you can complain to the entity involved or call the System Operator on 1800 723 471. If you’re not happy with their response, you can complain to the OAIC.

10. Remember you can choose to cancel at any time

If you decide to cancel your My Health Record, call the System Operator on 1800 723 471 and ask to have your record deactivated. It can be reactivated again later if you choose.

If you cancel your My Health Record, no one will be able to see it (including yourself) and no further information can be added onto it.

Information in the cancelled record will be stored by the System Operator until 30 years after your death, or 130 years after your date of birth (if the date of death is unknown_.

More information

What strikes me about this is just how complex the information provided is and how unlikely the vast number of people would be to take all this information on board and act on it, sound though the information seems to be.

Given a million people are going to get one of these records in the next few months - one really wonders just how well informed the ‘man on the Bondi Tram’ will actually be about what is happening and what risks there are to their privacy - and potentially to their career, employment among other things.

I really don’t think Australians have been properly alerted to the risks inherent in this giant government system having so much of your health information.

Re: 6:00 PM "If it's all so complicated, and the public haven't been the initiators of it all, or are even aware of it [mHR] why would anyone bother."

Basically the Department, presumably the man in charge of eHealth, from the top down believe that by compulsorily enrolling the public, sending them a letter to advise they are now enrolled and then making this huge truckload of documents available on the web the people will DO NOTHING. That is they won't ask to be de-enrolled because they have to do so via an email address and because swamping them in documentation will be so overwhelming they will become numb inactive zombies; so they will do nothing and the Government's enrollments will remain HIGH proving that the public really want the system which all of us taxpayers (including the zombies) will keep paying for over the next decade.

If an intelligent investigative journalist in the local media in the pilot sites ever got wind of what was going on the Government could find its trickery coming back to bite it in the bum big time. Are there any journalists out there?

I’m a trial participant (who’ll be opting out!) and I discovered these OAIC Fact Sheets recently too. There is no reference to them in the letter or brochure that trial participants have been sent, nor on the MHR website. These sheets are more useful than the information provided by DOH in assisting people to make up their minds about whether to stay in or opt out, but hardly anyone will ever know of their existence.The DOH information for trial participants does not include any of the issues that OAIC raise, such as the risk of allowing Medicare information to be uploaded, nor does it contain any advice to young persons on how they might take control of their MHR. Only parents are addressed.

Fact Sheet 46 advises us to “understand the access controls that are available to you once a My Health Record is created” but this is impossible as there is no detail in DOH trial information about the access controls (except that you will be able to apply them). When I asked the MHR Help Line for details I was told I’ll be able to see what access controls are available when I log in to my record. The person I spoke to had no appreciation that we need to know the details now to be able to assess the robustness, fineness or security of the controls and decide whether they are acceptable to us. I also asked the MHR Help Line whether, when we grant access, we were giving the access to the individual health worker or to the organisation that employs or contracts them. I was assured that it was to the individual health worker. I asked where I could find written assurance that this was indeed the case as I could not find any information about it on the MHR website. The person I spoke to could not tell me. Now I read the OAIC’s Fact Sheet 19 which says: “It is important to note that access controls apply at a healthcare provider organisation level, not to individual healthcare providers. This means, for example, that if you receive treatment in a hospital, you grant access to the hospital rather than individual doctors or other staff.” So, who is right? The Help Line person or the OAIC? My email to the Minister for clarification remains unanswered.The information trial participants have received is completely inadequate. With the trial announcement, we were promised an intensive awareness campaign “national activities …complemented by localised information campaigns… Primary Health Networks will be working closely with residents…” Rubbish. It hasn’t happened.